To watch 10 year old Xavier Baribeau in action you would never guess that his story started with a medical miracle! During prenatal testing, Xavier’s parents Carolyn and Jeff learned their baby boy had complex congenital heart disease. There were five issues challenging his tiny heart. His story would be guided by the hands of skilled cardiac surgeons with his first open heart surgery at just three days old. His condition was so complex and so fragile he needed to be closely followed by cardiac specialists. The Baribeau family relocated to Ottawa to be close to CHEO and their network of family support.
Xavier’s first few months proved to be a challenge. Xavier wasn’t allowed to cry as it would put too much stress on his troubled heart. He also had a severe allergy to milk protein. “It took three adults, around the clock to keep him fed, keep him calm and let him heal,” says Carolyn. “He had oxygen monitors with alarms going off all the time. Thanks to Xavier’s grand-maman, Diane, who came to stay with us we got some sleep!”
Diane even learned how to administer Xavier’s blood thinner injections. “I was terrified to hurt him – but when I did that first one – he didn’t even cry.” Xavier was being closely monitored by CHEO cardiologist Dr. Derek Wong and the hematology team. At four months old, he had a second surgery and a third at age two and a half. The family also learned how to use a home defibrillator, just in case.
These ‘tough’ real-life plot twists inspired Diane to turn a storytelling game she played with Xavier into a children’s book, Eeko’s Splash Landing where Xavier becomes friends with an alien. It’s about friendship, teamwork and diversity. “It was something I needed to do,” Diane says, wiping away a tear. “It was for me and for Xavier – his legacy.”
While Xavier’s story has been fraught with challenges, including emergency visits to CHEO, there have been positive developments, like the addition of a new character: Max – Xavier’s doting seven year old brother who joins Diane’s sequel, Eeko Returns to Earth. The brothers are very close with a mutual obsession for all things Lego!
Xavier is also cleared for sports and loves playing house league hockey. His whole family is rooting for their hero!
While his story is still a work in progress, thanks to CHEO and its highly specialized cardiac care team offering guidance and support at every turn, Xavier’s next chapters look bright!